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Gluten and Dairy/Casein Free...


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We are on day 16 and no change in tics. Behavior and allergy symptoms seem to be better and we are off allergy meds but the diet is just so hard and expensive. Also we are off sugar cane bc naturopath said he may have a sensitivity to fruit/sugar cane eaten together.

 

Wondering IF he had a sensitivity to either dairy or gluten would we have noticed by now? I can't even imagine eliminating more things bc this is so hard as it is...but of course there could be other food triggers. Going to see an allergist tomorrow who is supposedly more alternative/environmentally based.

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I would think by now you would have noticed an improvement if the gluten or dairy were connected to the tics

 

the fact that the allergies are improving does seem to suggest a sensitivity there maybe?

 

hope the new doc is able to be of help

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Going to see an allergist tomorrow who is supposedly more alternative/environmentally based.

 

Hi SAHM,

 

ask the allergist to help you with an ALLERGY ELIMINATION (or "allergy one") diet.

 

(you eliminate about ALL common allergans at once....for a week or so.........if symptoms are gone, then you know there is a food allergy, and start adding common/suspected allergans back one at a time........you'll see the symptoms within 72 hours of adding the offending food (be sure to eat a few meals of suspected foods a few times each day).

 

BEST WISHES!

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Thanks guys! Allergist said to go back on gluten and dairy and not even worry about doing one at a time (which I disagree with as long as we've put in all this time and effort and money - might as well carefully monitor reintroduction). But he said he needed to be on a "regular" diet to do all the tests that a DAN doctor would do for at least 2 weeks. And we are in process to get an appt with one so I guess we are going back on dairy and gluten but not so much sugar. I gave him milk tonight, he was thrilled.

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Thanks guys! Allergist said to go back on gluten and dairy and not even worry about doing one at a time (which I disagree with as long as we've put in all this time and effort and money - might as well carefully monitor reintroduction). But he said he needed to be on a "regular" diet to do all the tests that a DAN doctor would do for at least 2 weeks. And we are in process to get an appt with one so I guess we are going back on dairy and gluten but not so much sugar. I gave him milk tonight, he was thrilled.

 

Sahm,

 

I humbly disagree with the allergist on getting a false negative after a few weeks on the diet, especially in regards to gluten. Maybe that is possible with milk, I don't know. Is this a RAST test you are doing or an IgG?

 

If it were me I would look at testing for underlying fungal or bacterial overgrowth issues as a primary focus. This is just hindsight and experience talking. I have done allergy testing and can tell you that the IgE and IgG results will vary even if given to the same child on the same day. So treatment based solely on allergy results is faulty in my opinion. Allergies are a symptom of another underlying problem in my opinion and do improve if you get rid of the source of the gut imbalance. My son tested positive for 17 allergies (IgG) in the beginning. He now only avoids gluten, corn, too much sugar (we really limit it to special occasions and rely on using honey and stevia at home) and he also avoids yeast as he is prone to fungal infections. My opinion on this has really evolved over time. My feeling is that if the problem was solely an allergy problem then there would not be a neurological problem in addition to the allergy symptoms. What agent has broken down the blood brain barrier? There has to be a breakdown in the digestive system of some sort, or at the very least presence of another agent-- heavy metals, bacterial or fungal infections, virus that would lead to an exasperation of neuro issues.

 

I will tell you what I tell many folks who do GFCF only. It could be that there is another food intolerance that is causing significant symptoms in your child. For example, if the problem is fungal, then corn and peanuts are very problematic, as is, of course, sugar and yeast. But how would you know that without testing for fungal overgrowth first? I completely understand your frustration. From my perspective two weeks in treatment is nothing. Dairy takes 7-10 days to be eliminated from the body (so they say) but that is only if you are doing it 100% correctly, which is hard because it is in so many things and unless you copy and carry around a sheet with all the alternative names for dairy how would you know? Gluten, on the other hand can take 6 months to 2 years to clear, especially if your child has Celiac, which is an autoimmune response to gliadin. Our son is doing great over 3 years after the diet and has no neuro symptoms anymore but he still had antibodies in his stool test 2 years after we started the diet (they were low but not yet normal). I guess what I am trying to say is that you have to get it right with the ingredient listings, first of all, and secondly, you really have to have faith that you are doing the right thing and patience to let time slowly heal the damage. And believe you me, it takes a long, long, long, long time if the gut and intestines have been compromised. We saw reduction of symptoms after three months and a real turn around after 9 months. Two weeks is a flash in the pan IMO.

 

I don't know if you are doing any kind of supplemental program but that was key for us in the beginning because my son was not absorbing nutrients in his diet, even with the new restrictions and we relied on high doses of specific supps to help him function without terribly bad symptoms. We used Bonnie Grimaldi's supps for quite a while and really felt that they were necessary while his body was healing. He still ticced daily but his mood and symptoms were much better on her supps. We phased that out to do a special compounded vit/supp program with Pfeiffer Treatment Center that included chelators. We did that for six months. After the nine months he was on the mend in a good way but still had neuro reactions to accidental ingestion. Now he does not ever tic with accidental ingestion. He may get a headache or feel 'off' but the severity is much lower. We do not eat regular meat anymore or regular eggs. We do pasture fed organics and lots of veggies and fruit, low grain. He loves his diet and will get corn free cakes and sweets for special occasions so we strike a balance. But if this is truly your problem then unfortunately you have to be in it for the long haul.

 

A good test for fungal/bacterial/nutrient absorption levels is the OAT test from Great Plains. We have used it with more than one family member here through our general practitioner. He found it very useful.

 

Caryn

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Caryn, first of all THANK YOU so much for your lengthy and thoughtful response!!! I am so grateful for this resource and for people like you who take the time!

 

I think the reason he said to go off the GF/CF/Sugar free diet is because when we do get an appointment (hopefully in a couple weeks) with the local DAN! doctor, he will need to do all the TESTS (Like millions to me....overwhelming) with him on a "regular diet." I totally agree with you about the allergy/IGG tests being unrelated to sensitivities and neurological correlations but I guess I didn't want to go 100% full force food elimination (esp with a picky kid who is so jealous of his friends and fam that can eat anything, bday parties etc) unless the DAN! guy said to do so. I love your suggestions for fungal/bacterial/nutrient absorption tests and I think the allergist yesterday agreed but thought my son needed to be on a regular diet to do those tests.

 

Also, I feel fairly strongly about a connection with his 5yo vaccines that were 5 days before tics started. I am not sure I want to put us through the "trauma" of food elimination unless absolutely necessary. That sounded bad - I will totally do anything for him but want to target our energy in the right direction and in the right order. Not sure if that makes sense.

 

Poor guy, I am so sad about this...

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Sahm,

yeah. I hear you. I couldn't agree more about the diet stuff. I didn't even know how to cook when this all started and we ate out A LOT. Once the labs come back you will have a clear picture. Just remember what I said when things get tough (and they will). It really does get better in time.

Caryn

And, BTW, we saw the same thing in our house, onset after a vax.

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Also, I feel fairly strongly about a connection with his 5yo vaccines that were 5 days before tics started. I am not sure I want to put us through the "trauma" of food elimination unless absolutely necessary. That sounded bad - I will totally do anything for him but want to target our energy in the right direction and in the right order. Not sure if that makes sense.

 

To me, all of that makes total sense.

 

You are fortunate to have help available to you in navigating the path.... :)

 

 

 

(FWIW:)

In my son's situation, it was 10-15 years ago, and we live in a rural area where no help other than "traditional" was available at the time. In his situation , he had about 6 or 8 food "allergies" that, when all were eliminated simultaneously, about 90-95% of his motor tics were eliminated........and if only one food was re introduced, the tics would start back.....so, for us to have just eliminated one food at a time......no change in tics would have been noticed, and we'd probably have wound up thinkng it was completely NOT food allergy/related (esp because he DID see a traditional allergist who did tests and nothing showed up to foods....).

 

(However, many others have tics that have responded to other things so my son's case is just one of many many possible scenarios, as you would know....)

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I really appreciate both of your replies. I would really like to do a "real" food elimination diet with him and I am curious what this doctor will say. I might do another post asking for advice about which tests I should ask for since this appointment time is so precious and expensive. I know there are SO many tests we can do which is overwhelming! :) I do feel fortunate to live near good resources though, I HOPE this will be a step in the right direction. :)

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